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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Minutes of the Forward ME Group (UK) July 2013

Discussion in 'General ME/CFS News' started by Bob, Jul 31, 2013.

  1. Bob

    Bob

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    Probably mainly of interest to UK folk. (I think.)
    I think this deserves its own thread, as it's so interesting, and covers so many different topics.

    Forward ME Group
    Minutes of Meeting, 2 July 2013
    http://www.forward-me.org.uk/2nd July 2013.htm

    Same info copied onto ME Association's website:
    http://www.meassociation.org.uk/?p=16383

    Discussions include:
    Extensive interview with Prof Stephen Holgate re UK Research Collaborative, re his background, aims and opinions. (Also includes short discussion re the 'harassment' clause.)
    Short discussions of two separate UK 'ME' centres of excellence being set up - one in Norfolk/Sulfolk, and one in Kent. (The Kent one is an interesting new development, as far as I'm aware.)
    Short discussion re potential UK Rituximab trial.
    Short note re Esther Crawley's Lightning Process study.
    Short note about a parent's complaint about a hospital (no details given.)
    Some short notes re meetings with DWP and ATOS.
    ...and more...
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  2. Dolphin

    Dolphin Senior Member

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    Yes, found it interesting.

    A big problem, unfortunately, with Stephen Holgate's idea of having a sample of 5000 people and doing lots of tests on them is money and the lack of it. Even if the MRC were to fund such a study, I believe they would likely only test for a small amount of things (Esther Crawley wants to look at genes I believe).
  3. Bob

    Bob

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    Yes, it would be very expensive, but maybe worth having high and ambitious aims? If anyone can get things moving, bring people together, and have influence on the MRC, then I think perhaps Stephen Holgate is the person who can make a difference. I hope so anyway.
    Simon likes this.
  4. Bob

    Bob

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    Which ones; behavioural genes?!? :rolleyes:
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  5. Dolphin

    Dolphin Senior Member

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    Can't remember. But it seemed to be about inherited genes rather than gene expression. I am more interested in the latter, although any big study could be interesting.

    She seems quite restricted in what biological angles she might look at (at least in terms of what I recall she has mentioned), given her PhD, etc.
  6. Sasha

    Sasha Fine, thank you

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    This bit is v. interesting:

    3.8 Professor Holgate concluded by referring to a list of priority research interests that was being drawn up by the charities on the Executive. Sonya Chowdhury had been collecting a list of priorities from each of the five charities that sit on the Research Collaborative Executive Board. AfME’s priorities were based on an on-line survey undertaken with supporters. Professor Holgate thought that, once a short list of, say, ten research proposals, as many charities as possible should be asked for support to co-fund their chosen one. The Chairman said that when the Collaborative was ready she would bring it to the attention of all the ME charities.​

    Just like the US OMI-MERIT initiative, in fact - good to see they're copying and building on an excellent, innovative idea.
  7. user9876

    user9876 Senior Member

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    He seems to be working on the assumption that ME is around 12-15 different things and that by taking samples he can carry out some data analytics and look for trends etc. Whilst I think there may be some merit in this idea there are also dangers in particular if there are a number of different disease processes each leading to sets of overlapping symptoms and with a degree of variability in symptoms any analytics may not come up with clusters associated with the mechanisms. Hence could lead people down the wrong path.

    If the samples contain longitudanal data (i.e. how things change over time) then this might help. I would have also thought that things like knowing the affect of a particular stimulus may also be more significant; for example, a drug or an exercise test.
    alex3619 likes this.
  8. Simon

    Simon

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    Will certainly be very expensive, but I agree with Bob - Stephen Holgate should never be underestimated. My understanding of the plan is that the data and biological samples would be avaialable to other researchers, so it wouldn't be a question of one finite pot of money. The funding would be to set the system up and collect samples. Other researchers would then apply for funds for specific projects.
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  9. Bob

    Bob

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    It seems that Stephen Holgate is a man with a plan.
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  10. Firestormm

    Firestormm Guest

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    Like :) I'm assuming Prof Perry was commenting there in general across the whole of 'ME' and/or 'CFS' research; but whatever way you look at it, I think it's a noteworthy comment. Double Like about the trust too :)
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  11. Firestormm

    Firestormm Guest

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    Forgive the repeated extract I am having to ponder these minutes rather carefully today:

    So in order to move away from managing the condition we need to look to new science and develop better understanding of causative pathways. Hmm...

    Rather depends on how you view 'the' condition I suppose. Is it a single condition caused by various things and/or triggered by various things; or is it a collection of things - a syndrome - caused by a common collection of things. Or maybe that will all become more apparent with this kind of research.

    Certainly agree - in my layperson's guise - with the breakdown in cause and effect. We have been faced for a very long time with 'management strategies' after all and a whole host of theory and bitty research.

    But the landscape is changing. Large scale infrastructure and research projects are taking place. The initiative is there. ME is on the map. Still, it's all good stuff.

    What were the models previously used [underlined]? Am I right in thinking these were to treat the symptoms and not the cause? Is that what he means do you think or is he hinting at certain [cough] psychological explanations and other 'stuff'?

    Before we can understand the pathways - we must surely need to identify them [underlined] but I'm sure that's also what he means.

    I know you guys covered some of this above so again sorry to if I am repetitive.

    This is going to dwarf the ME Biobank. That particular project is looking at 500 samples within 5 years as a target (they have around 150 at present) and I can say that even with the NIH money (or a certain part of it) and off the top of my head without looking at notes - we are talking about around £300,000 to be where it is now i.e. 2 years in. So this ain't cheap brothers and sisters.

    However, I wonder if the MRC with Holgate in support and in the driving seat is proposing future funding of the Biobank project. I mean this could be the most significant event. 5,000 samples. And I am only presuming they are blood. Imagine if he extends his thinking to post-mortem tissue. Flipping heck Batman :)

    However samples are collected, let's assume it is through a long-term viable Biobank, then this is a lengthy project - depending on the amount of funding of course. It takes a long time to even assess and evaluate the patients, let alone collect and process samples which are stored at UCL.

    5,000 samples. I mean holy crap. And once these samples were taken of course the patient is followed throughout - there are updates to clinical status etc. - and the samples themselves are ever available to others. It would constitute the largest depository in the world.

    Tie this in with the Disease Register and Post-mortem Tissue Bank (which is on hold due to priority being afforded the Biobank); and well... we have infrastructure baby.

    What they do with the samples and how they identify the pathways, well that's for the next stage. Getting this off the ground is going to take enormous organisation and effort.

    Well certainly food for thought. Gods :balloons:
  12. Simon

    Simon

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  13. Sasha

    Sasha Fine, thank you

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    I'm not sure he's proposing an addition to the biobank (which involves long-term storage of samples for use by other and future researchers) rather than a one-off study without banking, which would be considerably cheaper (but a bit of a waste of a potentially useful resource).
  14. Firestormm

    Firestormm Guest

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    Yeah I realise that. A case of 'wishful thinking' on my part I am afraid. And I do think it will be a waste in the long-term; but what do I know? :)
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